Saturday, 2 September 2017

What a cold does to us

Just too many deaths

These last few days have been very painful.  First we heard of the death of a friend (not ph related) at the age of just 60.  Though I am not sure of all the details it appears to be something to do with his heart.  His wife is asking for donations for a defibrillator so maybe if there had been one close to hand he could have been saved.  Sadly due to lack of oxygen his family were told that there was nothing that could be done, though they got his heart beating again he was brain dead.  He died peacefully a few days later.  Today is the day of his funeral so I will go and pay my respects.  So sad for a family to lose a loved one so suddenly.  One day he went to work and he never returned home.  

The next death was our own Jane Jellyfish Davis who fought hard her battle with ph and other illnesses.  Sadly he kidneys could not take the strain any more and I believe this was the cause of her death.  She had been in and out of hospital so many times and kept fighting back with a great spirt.  She will be remembered as well for her jams and chutneys of which she made  many.  Rest easy now Jane, you will be missed by so many of us.

The third death was yesterday (Wednesday) and it was the expected, though sad death of my godmother.  She died in Whitby surrounded by her family who told me her death was a peaceful one.  I am so thankful that I had managed to see her just two weeks ago, I knew the end could not be far off even then.  Her biggest fear was that she would end up in a nursing home and I am so thankful that she did not, just one night in her local hospital.  There will be a small funeral for her in Whitby and then a small memorial for her back here where her ashes will be laid to rest along side her beloved Ken, my godfather.  

The is the end of an era for us as a family and we will never return to Whitby without carrying them in our hearts.

Leeds girls day out

No not a rowdy set of girls “doing the bars” but a day out for just Izzy and I.  Grandma and granddaughter time together.  Though I was very nervous about how I would cope it actually turned out really well.  We went in on the train and Izzy loved it.  She told me it had been a while since we had been on a train so it was still a “fun” thing to do for her.  Our goal was to go to the Trinity Center and buy her she new lego ready for her holiday with grandad in York.  There is always something going on in this center and this day was no different.  This time there was a slide, not any slide but one that was enclosed and twisty.  At the top was a wind tunnel where there were lots of leaflets blowing around.  the object was for Izzy to catch one ad then she was to be allowed down the slide.  At the bottom was a lovely setting, it was as if she was on a beach with deckchairs and swimming things all around. They were promoting a new French Restaurant.  

As it was too early for lunch we did what we had set out to do, chose new lego, went to TK Max where she eyed up two dolls so much that of course I fell soft and bought them for her.  We both tried on boots and trainers, though left without any.  I must confess to laying down on the enormous seats they have for the customers to try their shoes on.  Nobody was about and my body was telling me I just needed to do this.  After a short rest we decided it was time for a real rest in the shape of going  to lunch.

This French place that had been promoted at the Trinity Center was really lovely.  I was presented with a glass of bubbly and we were seated where  we could watch the world go by .  Izzy was given a drink and we were also presented with some gorgeous garlic bread which we both ravenously tucked into.  This was all for free as it was part of the promotion for their new place.  I then decided to order from the menu and we both enjoyed our main courses, though as Izzy has four loose teeth it was not easy for her to eat chicken without the fear of losing one of her teeth.  Fortunately she did not.  After a gorgeous dessert and such a long rest we both decided we needed to head for home.  A smooth journey back and a taxi to our house and I flopped onto the bed.  I was absolutely shattered but she was happy to lay by the side of me and play with her new dolls.  We both agreed grandma and grandaughter days should be on the cards more often.

Right now she is away in York with her granddad. My friend Lucy is here with me so I certainly do not have time to get bored.  I did go to York with them and spent a few hours before catching a train back home.  We went to the Jorvik Center and I was surprised at the questions she asked the archeologist about the dig and the things they had found.  The shrinking violet has gone to be replaced by a very confident little girl who is quite happy to step forward and discuss things of interest.  She loves skeletons in particular and took a great deal of interest in examining the bones to look for signs of arthritis etc  One of the bodies had an extra tooth so she was amazed by this!

Onward to Barley Hall a reconstructed medieval townhouse.  This was originally built around 1360 by the monks of Nostell Priory.  Once again she was blown over by the history of the place and we must have spent over two hours in the few rooms there are.  In the end she was so reluctant to leave but I had to go for my train so I left her there with grandad.  As she was so interested in history and digs etc it was decided she would go on an archeological dig in York too.  Of course this was designed so that he children did “find” things” but I think this is a wonderful idea as it piques their interest even more.  It would not surprise me at all if this child later in life goes on to do something in the world of archaeology as she has shown over the years a great love of finding out and wanting to learn more about our past.  or maybe she could become an historian, time will tell.  

York Maze

A day was spent in the York Maze.  Izzy loves this place and for those of you with children, or indeed without this place is amazing {excuse the pun}   From the house of confusion to the pig races and the maze itself, soon to be removed to begin new growth for next years maze there is so much to do.  This is such a fun day out for the whole family.  The maze easily copes with wheelchairs and mobility scooters too so nobody needs to feel they will be excluded.  The Maze is only open from July to September when the crop is harvested so please check with their website if planning a trip. 

It is  just a cold!!!!!........ or not.

It was nothing more than that, I had a simple cold but in the world of ph it means so very much more.  It means legs that shake so bad they feel there is not enough strength to hold you up,  it means the wheeze in our chest that makes us wonder if it is going to “settle” and give us an infection.  It means keeping a careful eye on it ready to take the antibiotics if it does take a turn for the worst, though hoping they are not needed.  So a simple cold to many is nothing more than that.  to us it could end up with a stay in the hospital.  I have been admitted numerous times with a cold that turned bad.  I felt this was “just a cold” and I believed I was on the mend.  The tissue mountain became less daily, the vic was not being used as much and I could now risk clean sheets that would not be covered in the smelly stuff. 

Well I was so wrong on that score for sure.  The cold that I felt was disappearing came back with a vengeance and slammed me with such a wheeze, not able to breath properly and a feeling of such constraint in my chest.  I rang the doctor who asked me to go in for them to listen to my chest.  thank goodness I did.  I saw Dr Davis who is the doctor who knows my ph specialist personally.  He listened to my chest and stepped back in horror.  He said my lungs were really bad so antibiotics it is once again.  He also took a blood test to check for pneumonia, though I am sure I do not have that.  The speed of which a simple cold turns bad is alarming.  I shall be resting for the next couple of days.   

Time out

Thank you for all the lovely comments on my post when I said I would be returning to Facebook after taking time out for a couple of weeks to share in taking care of  Izzy who was spending her days with us.  It felt so good to spend time doing crafts and things with her without checking  the computer to see if there were new ones who wanted to join the Pulmonary Arterial Hypertension Support Site.  It was time well spent as I have returned feeling much better and more refreshed.  Whilst social media has a very definite place in our world today I do believe that time spent away from it can also be very beneficial.  I know quite a few people who have posted in the past that they are just taking time away from the computer.  I can't believe it does any harm at all.  It certainly worked for me and I feel so much more focused. 

The wanderers return

Colin and Izzy arrived home yesterday.  We are still clearing away all the things they both brought back from their trip to York.  This apartment is too small for all of this, roll on the new house.  Izzy was full of all she had seen and done in York and is looking forward to her next trip.  Her grandad is looking forward to a rest!  I am sorting out things to take to our local charity shop so a trip there will be needed today.  Other than that nothing is on the cards for me but to rest.  

So this is a boring blog really but at least you know I am still around

Much love to you all and thank you so much for taking the time to read.

Carole xxxx 


  1. I really enjoy reading your blog posts, they are really well written and so easy to digest when you have a brain of a flea and constantly read things over and over again so that it goes in!

    1. Lol. I know about the brain of a flea! It is encouraging when I get comments such as yours cos I sometimes think people must be bored of them! I write blogs to connect with you all and just to show we can live with ph even when we have the down times. Thank you my friend. Xxx